ENERCA enters a new era: e-ENERCA

The new phase of the project started in September 2013 and will focus on e-Health tools for rare anaemias

September 25, 2013

ENERCA is a project funded by the European Commission through its Executive Agency for Health and Consumers (EAHC). After three successful phases of the project, which started back in 2003, e-ENERCA will develop during the next three years modern e-Health tools for a better management and knowledge of rare anaemias. As the previous phases of the project, it pursues the consolidation of a European Reference Network in rare anaemias and focuses in professionals as well as in patients and their families.

e-ENERCA is not just a continuation of ENERCA 3, but a clear real step forward to the consolidation of the European Reference Network of Centres of Expertise on Rare Anaemias (ERN-Rare Anaemias). It will incorporate the innovative e-health information and communication technologies to create a pan-European interoperable e-health platform for teleexpertise/telediagnosis, electronic registry/epidemiological electronic health records and e-learning.

As a result of the implementation of new e-health tools, e-ENERCA will create a new strategic collaboration environment for promoting the participation of European health professionals, researchers, medical education stakeholders and patients in the design and validation of health care services. This will be especially important for overcoming the current diagnostic difficulties for tackle rare anaemias, which cause remains unknown in more than 20% of the cases.

Rare Anaemias are Rare Diseases with prevalence in Europe less than 5 per 10.000 individuals. Major forms require red blood cell transfusions and iron chelating therapy as main therapeutic options. Preventive programs aiming to epidemiological control and a better diagnosis and clinical management of major rare anaemias are crucial for decreasing the affected birth rate and achieving an efficient balance between disease morbidity and patient’s life capacity.

Since 2003, ENERCA has taken an active role for improving this situation by:

The creation of a European Reference Network (ERN) of Centres of expertise in rare anaemias, on the basis of a legal and ethical analysis, technical consensus criteria, and patients’ expectations.

The promotion of best clinical and laboratory practices.

The publication of ENERCA recommendations.

The improving of continuous medical education by the organization of topic specific training courses.

The empowerment of patients by cooperation with Patient’s Associations and co-organizing an annual European Symposium on rare anaemias with interactive patients-health professionals sessions and educational material in different languages.

All these ENERCA outcomes have had a wide geographical coverage and an efficient impact as a high number of health professionals and patients were implicated. Now, the innovative e-ENERCA goals, while implementing the e-Health tools for all the EU member states, will allow to improve the impact of former actions in the prevention of major rare anaemias effects on the quality patient’s life, and in the decrease their health care burden.

Learn more about the organization and the objectives of e-ENERCA in the About ENERCA section of the website. The ENERCA team is highly motivated and faces the new challenges with illusion.